Is Living with Cerebral Palsy the Right Choice?
No one ever told me how difficult the month of May can be, when your daughter is graduating from high school!
I bet you thought I forgot about you, right? Not so! But, I haven’t had many new suggestions for articles. So, I am going to play the devil’s advocate and ask a VERY controversial question:
Is Living with Cerebral Palsy the Right Choice?
When I was born 7-8 prematurely half a century ago, it was a miracle that I survived. Today, babies born 4 months early are surviving, thanks to advances in medical technology. But, at what cost?
A couple of weeks ago I read the article: Two new pieces of research raise a profoundly troubling question: Is it sometimes wrong to keep premature babies alive?
Several cases of premature children are highlighted in the piece. In short, parents are given the agonizing choice to allow their child/children to die or let the doctors to use extreme measures to sustain life. What makes the choice so difficult is the prognosis. Allow you child to die, or save his/her life at the risk of being profoundly disabled for a lifetime.
In some cases, the parents are blessed with a healthy child, in the long run. Unfortunately, other kids are quadriplegics, severely mentally disabled, in pain, and unable to do anything for themselves.
So, read the article. Then, share your opinion. Should doctors use extreme measures to save a baby that will likely suffer brain damage and live a life of struggling with cerebral palsy and other health concerns?
June 9th, 2010 at 11:43 am
This is an extremely difficult question, and I know that many people have very strong opinions on the subject, but here goes. I think that the only ethical option is to provide the parents with all the information possible, including arranging for them to speak to parents who are raising these children. They should speak with parents who would NOT choose to use extreme measures if they had the choice to make again, as well as those who are happy with their decision, and be provided with as accurate a picture as possible of what their lives will be like with their child. They also need to be made aware of the options for care if the child outlives them, since this is a likely outcome as well. Then everyone should step back and allow them to make the decision without judging them, then SUPPORT them in that decision.
Even though society as a whole bears many of the financial costs of raising severely disabled children, we have no right to interfere in the decision making process. We are not the ones who have to deal with the pain and stress of raising a child with disabilities, or the grief of losing that child, and the choice must be left in the hands and hearts of those who do.
June 9th, 2010 at 1:16 pm
Wendy,
Well said! Such a hard subject. As a child with CP, I know it was hard on my parents. But, I also know my mom is very glad that I survived that first month. On the other hand, I see kids that have absolutely no quality of life and a basically shells that breathe. As a parent, I can see the heartbreak and misery either way. But, you are right. No one else can make that decision. I am just glad I never had to.
Thank you for responding.
June 18th, 2010 at 4:23 am
My cousin recommended this blog and she was totally right keep up the fantastic work!
June 20th, 2010 at 5:01 pm
This is an extremely difficult question, and I know that many people have very strong opinions on the subject, but here goes. I think that the only ethical option is to provide the parents with all the information possible, including arranging for them to speak to parents who are raising these children. They should speak with parents who would NOT choose to use extreme measures if they had the choice to make again, as well as those who are happy with their decision, and be provided with as accurate a picture as possible of what their lives will be like with their child. They also need to be made aware of the options for care if the child outlives them, since this is a likely outcome as well. Then everyone should step back and allow them to make the decision without judging them, then SUPPORT them in that decision.
+1
June 20th, 2010 at 5:38 pm
Whenever I see people like you which sharing information for other peoples, I feel so glad, thanks for your information and continue your work.
June 22nd, 2010 at 10:42 am
This is a very great post. I will print out the post and read it carefully again. Thanks
June 30th, 2010 at 5:30 pm
Thank you! I know it’s a very controversial subject. But, I thought it was worth thinking about. I know I take my abilities and disabilities for granted. As the “child” with CP, I had to grow up to realize the hard decisions my parents had to make. I feel for the parents facing this dilemma, regardless of what they decide in the end.
June 30th, 2010 at 5:30 pm
Thank you!
June 30th, 2010 at 5:32 pm
Support is key! I am so glad I was never put in that position with my own children. My heart goes out to those who face this heart-rendering challenge.
June 30th, 2010 at 5:33 pm
I hope you come back again!
August 13th, 2010 at 7:06 pm
This is such a hard decision for parents to make, but who wants to see a child suffer for years.
My heart goes out to parents who are facing such challenges. I agree that a support system is helpful.
Thank you for such important information.
Cerebral Palsy
August 20th, 2010 at 2:07 pm
Margie,
Thanks for you comments. I am so grateful that I never had to make that decision. It also makes me want to hug my mom. I think my living with cerebral palsy is harder for her, because she is such a caring mom. Of course, she would deny it.
August 22nd, 2010 at 7:50 am
Hello,
I found your site through a google alert and the first thing that i want to say is. Thank you for writing. My beautiful granddaughter Hailey is 3 years old and has Athetoid Cerebral Palsy. I love to hear about people who are living a happy and fulfilled life with C.P. it gives me hope that Hailey will also. The 2nd comment would be about your tough question “Is living with C.P. the Right choice” Although I am not Hailey’s Parent but actually her Grandparent I am actually very much involved in her everyday life as she and her parents lived with me for her first 3 years (they moved 15 minutes away so that Hailey could go to a better school). I am so glad that Hailey is here!I thank God everyday that the Doctors brought her back to life. Her beautiful smile lets me knows that she is going to be o.k. I do get very annoyed when I realize that she will not have the quality of life that she deserves. But we cannot focus on what she won’t have and focus on what she will. I will continue to follow you on your blog and hope that you glance at mine.
August 22nd, 2010 at 10:13 am
Janet,
Thank you Janet,
First of all, not only did I look at your blog, but I am going to provide a link to it from mine. Haley is absolutely beautiful! She is also very blessed to have you for her Gramma. My mother paints as well, so I also love you site for that reason. Awesome! I would like to use that poem in my next blog-like today- with a link there also to yours.
I have no doubt that Haley’s life will be challenging. I also don’t believe that God make mistakes. With a loving family, I believe that she will be able to reach her full potential and have a good life. She looks very happy to me!
Thank you so much for sharing and making me feel good today!